op-ed

The Check Is Not In The Mail: Shocking New Bills Delivered To Families With Chronically Ill Kids

rare disease day Shutterstock/artden

Imagine a situation in which a person desperately needs a car to get to work and care for a family, but has few resources. After extensive research, the buyer identifies a car that is sold for a set price of $6,000, and the buyer finds a car manufacturer willing to cover a lot of the costs of that car. On the day of purchase, the buyer shows up with a coupon from the manufacturer for $5,500 and a personal check for $500.

Rather than driving away with a car, fully paid for, the dealership takes both payments, and says that the buyer still owes $5,500. Stunned, the buyer explains that the costs are covered. Not by you, says the seller. You did not personally meet the full obligation, so you must pay.

This is the kind of bait-and-switch tactic some families dealing with rare diseases, those diseases impacting fewer than 200,000 people, are facing. As mothers who both have children living with the rare disease of Cystic Fibrosis, we observe Rare Disease Day this week troubled by a new financial burden with has surprised too many.

The controversial policy change, called a Co-Pay Accumulator, just now being felt by families nationwide, is no accident. “Accumulator programs target specialty drugs for which a manufacturer provides copayment assistance. Unlike conventional benefit designs, the manufacturer’s payments no longer count toward a patient’s deductible or out-of-pocket maximum,” notes Dr. Adam J. Fein, Ph.D., President of Pembroke Consulting, Inc. and CEO of Drug Channels Institute.

Pam understands this dilemma. With a $7,000 deductible and expensive, monthly medications to pay for, she relied on the drug company coupons to assist in meeting the deductible, something that she was careful to address at the first of the year, as her son Dylan needed a sinus surgery. The high school senior who is captain of his lacrosse team struggles with breathing issues like most Cystic Fibrosis sufferers, and needed to address the situation with the spring sport underway.

But on the day the family arrived home from the surgery, they were met with a letter from the insurance company letting them know that only the amount they personally covered for drugs now counted toward their deductible — meaning that the surgery they had arranged for in good faith would be at their expense.

Pam’s family is not the only ones find that their coverage has drastically changed.

California Rheumatology Alliance put it like this: “It has come to our attention that a new ‘Accumulator’ program has started to roll out that will directly affect a patient’s ability to use co-pay cards for biologic therapies dispensed through pharmacies … Consequently, co-pay cards given to our patients will only pay out-of-pocket costs up to the card limit. Once the card funds have been exhausted, the patient will be hit with the shock of having to pay the deductible all over again.”

As we both know, caring for children with a chronic disease is a daily commitment. And when a child has a rare disease, an added complication is the lack of affordable care options as few drug companies want to make the investment. Within the Cystic Fibrosis community, parents, advocates, and pharmaceutical companies diligently work together to raise the money to develop new treatments and ensure those drugs are affordable to all patients once they hit the market.

Still, families such as ours have earned the benefits of the coupon programs through our advocacy and fundraising, as we deal with a condition that most companies don’t address. Even this week, Kristan, for example, travels to Washington D.C. to talk with elected officials about the realities of surviving and thriving while balancing the demands of a chronic condition. That kind of communication makes a difference for those of us who live with rare diseases.

It’s difficult to understand why such a policy change might be directed against a community already burdened by unique healthcare dynamics. But there is a pool of people caught in this insurance crossfire. According to the National Institutes of Health, between 25 and 30 million Americans may be suffering from as many as 7,000 rare diseases.

For Pam’s son Dylan, and Kristan’s son Gunner and daughter Gracie, as well as for the millions of others, the Co-Pay Accumulator switch needs to end, so that families can receive the full benefit of the support offered to them through the drug company coupons.

For years, families have depended on the pharmaceutical company support to meet painfully large obligations. For insurance companies to find a way to block that assistance by requiring customers to cover the full deductible without available help reveals a callous and predatory attitude from an industry that should be focused on seeing patients with chronic conditions get the support they need.

Kristan Hawkins, a mother of four of whom two children have Rare Diseases, is president of Students for Life of America. Pamela Mertz, a mother of three boys, one of which has a rare disease, is CEO of Northland Electronic Sales.


The views and opinions expressed in this commentary are those of the author and do not reflect the official position of The Daily Caller.